Coping and support when you have bile duct cancer

Coping with bile duct cancer can be difficult. You may have a number of different feelings. There are things you can do, and people who can support you and your family.

If you have advanced bile duct cancer it’s normal not to be able to think about anything else. But everybody reacts differently. Many people find that knowing more about the situation can make it easier to cope with.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

You might find it helpful to talk to other people about how you are feeling.

Specialist nurses

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their phone number.

Friends and family

Talking to your friends and relatives about the cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Spiritual support

Some people find great comfort in religion. You might find it helpful to talk to:

• a local minister
• a hospital chaplain
• a religious leader of your faith

Cancer Chat

Chat to other people affected by cancer in our online forum. Our friendly team of moderators and nurses are also on hand to support you.

Physical problems

Bile duct cancer and its treatment may cause physical changes in your body.

Some changes may be as a result of treatment. This can include scars after surgery, or hair loss after chemotherapy. These may affect the way you feel about yourself. They can affect your self esteem and how you relate to family, friends and other people.

Tiredness

You may feel very tired and lacking in energy a lot of the time. This is called fatigue. Tiredness may be worse during and after treatment, or if the cancer is advanced.

Loss of appetite and weight loss

Many people who have bile duct cancer lose their appetite and some may lose weight. Speak to your specialist nurse or dietitian about any eating problems. 

Itchy skin

Many people with bile duct cancer develop jaundice . This can make you itch. Your doctor or specialist nurse may suggest some creams and medicines to help with this. 

Managing changes

Your doctor or specialist nurse will help you manage any changes. They can also refer you to other health professionals who can help. This may include:

• dietitians
• the symptom control team
• physiotherapists
• psychotherapists

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.  You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Support at home for you and your family

There are a number of people and services that can help if you have bile duct cancer. There is also support available for your family and friends.

GP

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

Community or district nurses

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Support groups

You may find it helpful to go to a charity or support group to talk to other people affected by cancer.